Good experience so far

I just thought I would tell everyone of our good experience so far in case anyone has to do this in the future.

My baby has a large kidney stone that started to block his ureter and caused some dilation. They can't go get the stone yet because his ureter is too small. So they decided to put in a stent (a small tube that goes from the kidney to the bladder) so the stone can't cause any blockage. They are also hoping that the stent will widen the ureter so they can get a laser up there and laser the stone in about 6 weeks.

From what I read on the Internet kidney stents were horrendous and painful all the time. Everyone said it is the worst thing ever. Well so far we have had a completely different experience. It was a same day surgery and besides being more sleepy than usual my baby has seemed pretty normal. He has bloody urine but that is normal and to be expected.

If anyone has any questions let me know!

Oh and he has a stone because he has a rare genetic disorder called cystinuria.

Comments (6)

Hi there! Thank you for posting this. I know you posted awhile ago but I'm hoping that you might still be active and able to share a bit more about you and your sons experience w cystinuria. We are looking at a possible diagnosis of cystinuria due to amnio results that showed abnormalities with I believe it is slc3a1 gene. I'm having a very hard time finding any information on how this condition manifests in babies and young children and would love to hear from you! Hope everything went well with your son's procedure!

Hi! Sorry it took me awhile to get back to you! We haven't done any gene testing. When my boys urine was first tested the cystine in it was 10x what it should be. That's what lead to the diagnosis. What questions do you have?

It doesn't! We didn't find out my baby had it until he got sick with a kidney infection that was unrelated to his cystinuria. While testing for VUR they found a large kidney stone which lead to further testing. My oldest son has no symptoms and we wouldn't have known he has cystinuria without testing his urine because it's genetic.

Hi!! Thanks so much for getting back to me! I guess I'm generally wondering how severe this condition is - I have read such varied things on the internet and some of it is scary :/. Are your sons on any special diets or medicines? Is it something that is a constant worry? Or more of just a keep your eye on it type of thing? Sorry for so many questions! Thank you so much for sharing your experience!!

It is really scary at first. It's scary to think about the future too because no one really knows how severe it will be. It just depends on the person. My son had a 1 cm stone when he was 10 months old. That's scary!! I worry that if he had one that big so young that his condition will be severe as he gets older. He hasn't had a sign of a stone since and he's almost three so I'm hopeful. My 5 year old hasn't had a stone and I'm hopeful he won't for a long time.

My sons do have a "special" diet. Low sodium. That's pretty much the only thing the doc has recommended. There are conflicting opinions out there on other diets but with my sons being so young and picky I don't feel the need to try something else when they are doing well. They also take potassium citrate 2 times a day. This makes their urine more alkaline so the cystine has a harder time sticking together. The doc also recommends that they both drink at least 60 oz. of water daily. More if they get sweaty.

We see our pediatric nephrologist every three months. He also checks their urine for cystine and creatinine levels. Every 6 months they get ultrasounds.

It may sound like a lot but it's our way of life now. Especially when they are doing so well, it doesn't seem like much.

The best support group I've found is on Facebook. It's called "international cystinuria foundation". If you have trouble finding it let me know and I can add you if you pm me your name. Let me know if you have more questions!